Craniocervical Surgery for Kate

Please help……..I cannot afford to save my own life.

My name is Kate; I am a 45-year-old with Elher-Danlos (EDS), a group of hereditary disorders that cause abnormal collagen function and affect the body's connective tissues. Connective tissues provide strength and flexibility to the skin, bones, blood vessels, and other internal organs.

EDS symptoms are different for each person, but for over 14 years, I have suffered from excruciating face, head and neck pain, extreme dizziness with even slight head movement, daily nausea and vomiting, and a variety of other neurological symptoms.

I desperately need craniocervical neurological surgery because the muscles and ligaments in my neck are not strong enough to hold my head up. Bone growth also impinges on my spinal cord at the bottom of my skull. The surgery will involve performing traction to pull my head into the correct position away from the spinal cord, attaching a metal plate to my skull and the C1/2 vertebrae, adjusting the CXA angle and scaping away some of the thickened linings of my spinal cord.

This surgery is not available on the NHS; although there is one surgeon in the UK who is able to perform this surgery privately, it will cost £45,000 sadly, we do not have the money to pay for this.

The surgery has only been performed 12 times in the UK and has many risks. I am not entering into this lightly; it is an essential operation, and my symptoms will only worsen, eventually leading to the severing of the spinal cord.

I am a proud and very private person, and only close family and friends see the real impact of this daily excruciating pain, dizziness and vomiting on my life, but I have taken the brave step to tell my story in the hope of some kindness, help and generosity.

My EDS symptoms include excruciating head, neck and facial pain all day every day, a vast array of neurological symptoms, autonomic nervous system malfunction including controlling my temperature, swallowing problems, irregular heartbeat, intense dizziness, POTS, Raynaud’s disease and Crohn’s disease.

I try hard to smile to hide the pain I endure all day and night; I cannot sleep, I take strong pain relief every day, I take heart medication, I feel true spinning vertigo when I move my head in any direction. Alone and scared, I ask myself, “How will I get through another day?”.

I live an existence, not a life. I am missing life as it goes on around me. I have missed so many special social events, weddings, Christmas parties, simple coffee and cake with friends, and a cup of tea at a friend’s house because I am laid in bed in pain, not daring to move my head because I will vomit.

No one should have to live this life in such unbearable pain, but this surgery can dramatically improve my life. I must wear a neck brace to hold my head up every day to take some of the pressure from my ligaments and muscles. But still, I try to keep smiling and trying to be the best mummy I can. I want to see my son grow up and enjoy some of his milestones with him, not from the sidelines with him telling me all about his ‘adventures’ when he gets home.

I want to go for days out and enjoy time with my family and friends, and not stand at the door waving them off on their ‘adventures’ and saying ‘Have a nice time, see you when you get back'. I don’t ask for much in life, I just want to be pain-free and not be scared to move my head for fear of feeling so much pain and dizziness I vomit.

Please help me; I can’t explain how grateful I will be for any small donation received, and please help by sharing this message and my story on social media wherever and whenever you can.

My husband wants to be my husband, not my carer; my son wants his mummy to stop crying in pain, and be a mummy, to make tea, take him for days out, go swimming with him, and my elderly parents want to see their daughter’s beautiful genuine smile again.

My 10-year-old son says, “It breaks my heart to see my Mummy crying in pain so much, I sometimes can’t cuddle her because I might hurt her”.

My husband says “I often wake in the night to my wife laying on the bathroom floor, inconsolable in pain, and vomiting, I hate that there is nothing I can do to take her pain away. I feel such helplessness that I can’t take away the horrific pain from the women I love; please help us and donate whatever you can.”

My mum and dad say "Please help us raise money for Kate to have this operation she so desperately needs to ease or hopefully stop the dreadful pain that she has suffered from for so many years. As her parents, it is heartbreaking to be unable to ease it for her, we so need to get back our happy, bubbly daughter. Words are not enough, but we really thank you if you can help at all."

Brother says "My sister is the funniest, sweetest, kindest person who has been fighting invisible pain for so many years. She is incredibly brave and tries so hard to smile through her pain, when most people would have given up. We have a diagnosis and surgery to help her, but we urgently need other people's generosity to help make this surgery possible. I can't sit by and watch her deteriorate anymore. She deserves all the love and support she can get."

Friend C “Please please donate to help my beautiful friend get some quality of life back. She has been suffering with this invisible illness for so many years now, and her life has literally been put on hold as she struggles with pain every single day and if enough money can be raised for surgery it will be life-changing. She gives so much love and kindness to those around her; if anyone deserves help, it’s Kate”

Friend J “I’ve known Kate since school; she has always been so ambitious, so caring and kind to others, just a truly amazing person. Please donate to my fabulous friend. Too many years have been lost to this excruciating pain and suffering. Help her have this life-changing surgery”

Friend A “I’ve known Kate since she was 13. She is my utterly adorable, crazy and fun-loving friend. The pain has stopped her from being these things, she can’t do anything anymore. Everything is on hold for her. I know she is in there, but the shell of pain she lives is suffocating her spirit and energy. She never moans or asks for help. Please help her. This is a life-changing amount of money to raise, but your help won’t change a life; it will give it back to someone who is still in there and just wants to be pain-free”

If you have the kindness and generosity to donate to this life-saving surgery, it will mean so much to us all. Thank you for reading my story.